Arthritis Walk recap

October 6, 2013

The annual Arthritis Walk, September 14, 2013, Edina, Minnesota

The annual Arthritis Walk, September 14, 2013, Edina, Minnesota

I’m sorry I’m so late posting this! Things have been a bit crazy in my life (see previous posts). The Arthritis Walk a few weekends ago was a great time and the weather was perfect and beautiful for it. Lots of people came out to participate in the walk and to support arthritis funding for research and to help those who suffer from the disease. It’s always inspiring and motivating to be involved in these types of events because you’re surrounded by positive, energetic people who are all passionate about arthritis issues. Many of the people involved also have some form of arthritis themselves, so it’s nice to be able to talk to people who can understand what you go through living with the disease. All-in-all, a fantastic event! Lots of money was raised, people got outdoors and came together to exercise and cheer each other on. As always, it was fun for me to walk around snapping photos of the walkers and other stuff going on at the walk. And, even though I decided at the very last minute to register as a fundraiser myself for the walk, I managed to raise over $200. Awesome! Thank you to everyone who donated and supported the walk — I really appreciate it.

If you wanted to donate to the walk and didn’t have time, you can still do it! You can make a donation on my page or you can donate on the main Arthritis Walk page too, I think.

Here’s my fundraising page again if you want to contribute something: http://awtwincities.kintera.org/angelalundberg

And here’s the link to the photos I took at the walk on the (Upper Midwest Region) Arthritis Foundation’s Flickr page:

ARTHRITIS WALK 2013 PHOTOS

Hope you like them!

Angela

The Upper Midwest Region chapter of the Arthritis Foundation is having its annual ARTHRITIS WALK tomorrow morning, and I’m excited to be taking photos of it again. I also decided at the last minute to join my friend’s team, The Young Adults, and participate as a walker and fundraiser in addition to taking photos. This walk is always a fun event and it’s inspiring to see how supportive people are of the arthritis cause — whether contributing donations, walking in the event, or just cheering others on.

Here is my personal fundraising page for the walk if you would like to support the walk and make a donation to the Arthritis Foundation:

http://awtwincities.kintera.org/angelalundberg

Here’s the link for the home page of the event, which has a lot of general information about it:

http://awtwincities.kintera.org

Thank you so much!

Angela

Juvenile Arthritis March, Bloomington, MN, 2013

Juvenile Arthritis March, Bloomington, MN, 2013

Where has the time gone?! Seriously. I’m sorry it’s taken me so long to post these JAM photos, but here you go! The annual Juvenile Arthritis March was held March 2, at the Mall of America, and it was a great success. It was the busiest I’ve ever seen it in the four years I’ve been photographing the event. And a record amount of money was raised this year – over $153,000! Anyway, here’s the link to the photos I took. Enjoy!

JAM 2013 Photos

Two days after JAM, I went to Washington, D.C. for the Arthritis Foundation’s Advocacy Summit. Once again that was a fantastic, inspiring experience. I’ll write an update post about D.C. and the Summit soon!

Happy Spring!

(there’s still snow here, ugh)

Angela

JAM 2013

March 2, 2013

JAM 2012, Mall of America, Bloomington, MN

JAM 2012, Mall of America, Bloomington, MN

Good morning! Why am I awake at 5:00 AM? The Juvenile Arthritis March (JAM) fundraising walk is this morning at the Mall of America! I’m taking photos again for the fourth year, I think? It’s always such a great, positive event – usually with a large turnout. I’ll post a link to the photos once I get them uploaded. Although I’m not sure if I’ll have time to do that before I leave for the Advocacy Summit in D.C. Monday morning. Yikes! I can’t believe I’m leaving so soon for that already.

More info about JAM can be found here, if you’re interested:

The Juvenile Arthritis March (JAM) 2013

capitolblog

The U.S. Capitol, Washington, D.C., April 2012

It’s official – I’m going to D.C. again for the Arthritis Foundation’s annual Advocacy Summit! The Summit this year is March 4-6th and I can’t wait. I registered for it yesterday – the last day to get the “early bird” discount. Hopefully I can get a travel stipend again like last year, because my financial situation is even more dire than a year ago (is that possible?). But being a part of the Summit is really important to me, especially since last year was such a positive, incredible experience. I’m going to contact some people at the Arthritis Foundation who are involved with the event to see if I could also photograph and write about the Summit in some sort of official volunteer way. I’d love to do something like that in addition to being one of the delegates.

Emily on Capitol Hill

Emily on Capitol Hill, 2012

Here’s a photo from last year’s Summit of Emily, part of our Minnesota group, reading a letter she wrote for Representative Keith Ellison (I think), sharing her story of living with arthritis.

Minnesota girls on Capitol Hill, 2012

Minnesota girls on Capitol Hill, 2012

And here’s a photo of Emily again, along with two other awesome kids (Sammi and Ali) who were part of our Minnesota group. I met and got to know so many nice people last year at the Summit – can’t wait to do it again!

Cooler weather, happier me

September 11, 2012

Palmer Lake, Minnesota, September 2012

It’s getting to be mid-September already and the weather has been cooler and less humid. However today it was a bizarrely balmy 95 degrees. What? Crazy Minnesota weather, I guess. Fall is my favorite time of year anyway, but I love it even more because the drop in temperature and humidity makes my body and aching joints feel so much better – especially my stubborn right ankle. Since returning from my trip to Europe a month ago, I admit I’ve been having trouble staying energized and motivated to get my life together and to get back on track with health stuff (diet, exercise, weight loss, doctor appointments, ankle). However, I did go on a long bike ride around Palmer Lake a couple days ago – twice around the trail! So that’s about eight miles total. My hardcore bicycling friends would probably find that distance rather wimpy, but it was the first time I ever did that, so I was pretty happy and proud. But, um, I haven’t been on my bike since then. Er. TOMORROW! I just can’t ride my bike or do any kind of exercise in 90 degree heat, and I think that’s understandable.

Read the rest of this entry »

Arthritis Summit Day 2

April 18, 2012

United States Capitol, Washington, D.C.

It’s 1:15 AM and I’m exhausted but I want to write a little update about yesterday’s events. My Minnesota group met with Senator Al Franken yesterday evening at his office on Capitol Hill. The meeting went well, I think, and he seemed interested and receptive to what we had to say regarding him supporting arthritis issues and the Patients’ Access to Treatments Act of 2012 (H.R. 4209). Supporting this bill would help improve access to medications for people with arthritis which can prevent disability. It would also end the discrimination and excessive cost-sharing of these medications with regard to insurance companies forcing patients to pay incredibly high co-pays and co-insurance because of how many of the drugs are designated as “specialty tier” medications (i.e. biologic medications which cost thousands of dollars per treatment/month – I currently take one of these, Remicade). Even though Senator Franken spent about 25 minutes with us (which is a long time for these meetings, we were told), I admit I am disappointed that I didn’t get a chance to talk to him and tell him my story of living with arthritis. I didn’t even get to say my name! So, yeah, that’s a bummer – especially since he is the one legislator with whom I was looking forward to speaking. Oh well. Hopefully I’ll get another chance sometime.

Today was a really good day though. The weather was warm and sunny and beautiful. Walking around the Capitol was a surreal experience – I couldn’t believe I  was actually there. Our group also sat in for a bit on a session of the House and that was really interesting to see. Other fantastic things yesterday included inspiring, motivating speeches and training we had before our Senate meetings. I continue to meet really nice, wonderful people from all over the country who are here for the summit. And, kind of fun, yesterday evening after dinner I did a little radio interview and talked a bit about how arthritis affects my life. These “hometown radio interviews” are supposed to get passed on to our local stations, however nobody can tell me more information about when they’ll air. It was fun to do though! After Day 2 of the summit, I’m incredibly wiped-out and my ankles are killing me, but I’m also more energized and motivated now than I have been in a long time. The inspiration and excitement continues…to Day 3, I hope!

And – I did start to upload some photos to Flickr if you’re interested:

Washington, D.C. 2012

Ok, time to pass out.

Goodnight!

Angela

Hello from DC!

April 16, 2012

Well I made it to Washington, D.C. today and through the first day of the Arthritis Advocacy Summit. Most of the day was spent traveling though, so I am really exhausted (I only got about three hours of sleep last night, which didn’t help). I made it in time for the group dinner and first advocacy training which outlined our agenda for the rest of the summit and especially our Senate and House meetings on Capitol Hill. Tomorrow are the Senate meetings. This morning and during my flights I was feeling kind of anxious and nervous about participating in the summit – not knowing what to expect, I suppose. But after meeting up with my friend Trish (who works for the Arthritis Foundation’s Upper Midwest Region chapter and is our group leader) and then meeting the other people in our group, I feel much more comfortable and excited about being here. Listening to other leaders speak about what we’ll be doing on Capitol Hill was also really inspiring. So yes, I am VERY GLAD I decided to do this! I’m excited to see how the meetings go tomorrow and to just be on Capitol Hill and being a part of our governmental process. I hope I’ll be able to pull myself together and sound halfway intelligent when I have to speak to the legislators to tell them about my passion for arthritis advocacy and about my own personal story of how arthritis affects my life. I think I can do it though.

Anyway, I just wanted to give a little update on Day 1 of the summit. I’ve already met some really nice people from all over the country who all have incredible arthritis stories of their own. And I’m quite impressed with the event so far. I’ll try to update every day while I’m in D.C., but now I must collapse into bed.

IGNORING ARTHRITIS IS UNACCEPTABLE!

Goodnight!

Angela

 

JAM 2012

March 11, 2012

Image

The Juvenile Arthritis March, Bloomington, MN, March 3, 2012

I finally got around to uploading the photos I took last Saturday of the Juvenile Arthritis March (JAM). I think I managed to get some good ones. Check them out on Flickr if you’re interested! Also, all the kids (and some adults) wearing orange T-shirts have some form of arthritis.

JAM 2012 photos

I’ve been trying to get more involved doing arthritis advocacy work and recently I’ve been sending emails to my senators and representatives in Washington, D.C. urging them support various arthritis issues and legislation. Here’s the transcript of the email I sent today to Representative Erik Paulsen (R). I have no idea if he actually reads any of these, but I figure that it can’t hurt to try, so I’ll keep sending them. Hopefully someone is reading them.

If you want to send an email or letter to urge your representative to support this legislation, click HERE.

Please Co-Sponsor the Patient Access to Critical Therapies Act!

March 9, 2012

Dear Representative Paulsen,

As someone deeply concerned about arthritis, I am writing to ask you to
become an original cosponsor of legislation to improve access to the
critical treatments that can keep me, and my loved ones, active and
productive citizens.  Biologic drugs can now prevent patients with
conditions such as rheumatoid arthritis, lupus, and psoriatic arthritis,
from becoming disabled, seriously ill, or even dying.

Unfortunately, many health insurance policies are moving these critical
medications, such as biologics, into “specialty tiers” that utilize high
patient cost-sharing methods known as “co-insurance”.  This
fourth/specialty tier now commonly requires patients to pay a percentage
of the cost of medication – anywhere from 20% to 50%, which can often be
hundreds or even thousands of dollars each month for a single medication -
rather than a fixed co-payment amount.

Congressman David McKinley is introducing legislation later this month,
the Patient Access to Critical Therapies Act (PACTA), that would treat
these specialty drugs the same as Tier III non-preferred drugs.  Under his
legislation, commercial health insurers would impose the same co-payment
obligations for specialty drugs as they already do for Tier III
medications.  Providing insured patients access to these treatments will
allow me and many more of your constituents to remain in the workforce,
raise their families, and avoid becoming permanently disabled or seriously
ill.

I urge you to step forward and become an original co-sponsor of PACTA and
support your constituents who have chronic, life threatening, and
disabling conditions.  Please contact the Legislative Health Assistant in
Rep. McKinley’s office, at x54172, to become a co-sponsor of this
legislation.

I have been on several of these “specialty” biologic drugs since about
2003 and I am also constantly in debt and trying to keep my head above
water to pay for these medications. If I don’t have the medication I will
most certainly become crippled. There are so many people out there in
similar situations to mine, and it’s not fair that we must be at the mercy
of the insurance companies and the drug companies just in order to live a
relatively normal life. People shouldn’t have to suffer because they can’t
afford to pay for medications. Please help.

Thank you very much.

Sincerely,
Angela

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